RE: [SPAM] Re: Inflammatory solutions to: Chronic illness, infection and inflammation, nume

[Guest guest]

It states cultured negative for all forms

of Herpes but doesn’t call out HHV-7 specifically.

These are ulcers said to be consistent

with Behcet’s. In the diagnosis of Behcet’s, these apthous ulcers will

culture negative to all types of herpes per Behcet’s literature. But in

my case, I haven’t found that to be true and some indeed do culture I

know for Varicella virus but they don’t culture most of the biopsies. The

Duke pathology report said it was tested for all forms of herpes, esp Herpes

Zoster which I have very elevated titers but I’m certain they don’t

culture these for everything.

I went back to the pathology report and it

refers to this as hyperplastic squamous mucosa with an area of ulceration with

marketed inflammation consisting mainly of lympocyctes and neutrophils. Acute

inflammation is present in the epithelium. Inflammation in and around the wall

of the vessel. No viral change are seen. These findings are non-specific but

consistent with behcets syndrome. My Behcet’s doctor refers to these as

complex apthous ulcers where they appear in my mouth and throat and just calls

them ulcers when they appear elsewhere typically eyes and genitals. It also

states it was negative for all viral inclusions including and it calls out each

of the Herpes types. States silver stains for organisms are negative.

www.emedicine.com/DERM/topic49.htm

From:

infections

[mailto:infections ] On Behalf Of timothy campbell

Sent: Saturday, September 06, 2008

2:07 PM

To:

infections

Subject:

[sPAM][infections] Re: Inflammatory solutions to: Chronic

illness, infection and inflammation, nume

Hi ,

You mentioned culturing negative for aphthous ulcers. Does that

include HHV-7? Dr. Kenny De Meirleir in Belgium last year told me that

he has established that aphthous ulcers are caused by HHV-7. He says

100% of ulcer biopsies are positive; 0% of controls are positive.

Tim

>

> I have been on this list at various times over the past five years and

> recently rejoined the list after re-engaging with one of my e-mail

friends

> who was active on this list.

>

>

>

> I have very complicated circumstances which started with specific

infections

> probably as a child and repeated lung infections after I turned 18.

Over

> the next 20 years my health was hard to say I typically have about

four long

> episodes of serious per year which often led to a pneumonia diagnosis at

> times.

>

>

>

> Then my problems became more affecting autoimmune type symptoms and

> inflammation in many many many areas of my body. With many disease

naming

> ceremonies from well-meaning and not well-meaning doctors I have been

> diagnosed with chronic relapsing MS, possible lupus but don't

consistently

> meet criteria,

>

> Behcet's (an inflammatory autoimmune disorder), endless inflammation in

> mouth and throat stomach and apthous ulcers which culture negative to

> everything.

>

>

>

> The current medical protocol for me by my doctors has me taking more

than 18

> different drugs most of which are intended to reduce spasticity reduce

> inflammation, myalgia, and more specific symptoms and body parts

again to

> reduce inflammation or two relax or reduce spasticity. The effect

has been

> that I believe I am very oversedated at times but that is another story.

>

>

>

> I have enormous allergies most anaphylactic covering the antibiotic

world.

> These would include things like penicillin sulfa quinolones tetracycline

> erythromycin. At very rare times I am able to tolerate oral doses of

> doxycycline and in fact did a pulsed schedule of doxycycline for

about nine

> months about three years ago. I don't tolerate that medicine very

well at

> all now. Pretty much my only option is vancomycin IV through my port a

> catheter. I have not needed this level of antibiotic therapy for

about three

> years.

>

>

>

> I believe that my real problems are chronic encephalopathy or

encephalitis

> related perhaps to specific infections perhaps even minor ones that

> occurred in younger years. While my spinal fluid has been tested I

have not

> received specific tests that I think would be more appropriate to

rule out

> continued and chronic damage to the brain rather than simply

assuming that

> it is continued progression of my MS which does not match my MRIs.

>

>

>

> It was suggested that one of the antifungals that I should try is that

> Lamisil which I have here. I have not been successful getting the

most other

> antifungals in the past although I did have nystatin on hand about six

> months ago.

>

>

>

> I have so many specialists that they all confuse each other and

seemed to be

> mostly unaware of my desperate health problems. I have become my own

case

> manager and asked my brain dysfunction and memory and other loss of

function

> and facial strength and so on is making this much more difficult.\

>

>

>

> My questions would be what do you think the role of AFS to treat

> inflammation chronically attributed to MS and these other autoimmune

> diagnosis. In the early year if I was sent to infectious disease

doctors in

> order to culture my ulcers and determined that they did not culture

out into

> anything at which point they did not see a reason to see me. Also is it

> actually possible that the real problem is that one of many infection or

> problems related to one of my illnesses caused the start of more

> inflammatory problems. How do I address any need to take long-term or a

> pulsed schedule antibiotics taste on my extensive anaphylactic

reactions.

>

>

>

> I will answer more questions off list but I just wanted to get this

topic

> started think you

>

>

>

> in NC

>